Mistake in pathology!

sherryjananderson

Believe it or not, my mom was told she was +, +, - and told she would not need to go through chemo, only hormonal therapy (Stage IIa with no sentinel node involvement, had mastectomy). We were very happy since my mom is 67 with extensive arthritis pain and we didn't want her to have to go through side effects.  We received a copy of the report so we could see the results. 

One week later, we get a phone call from the oncologist who says that there was a mistake with the data and that she is actually Triple Negative. HUH??  Apparently, a secretary at our local hospital input the wrong data that she took from the original Lab report from NYC. Someone at the oncologist office happened to take a look at the original lab report and noted it was different than what came from our local hospital.  BAM!  Now, chemo is her only option.  To add insult to injury, I spoke to the Path. MD who had presented my mom's case at the weekly cancer conference. She had thought it was unusual that my mom's tumor was high grade and was ++-.  I asked her if she thought to double check the data at that point and she said no. In fact, no one at the conference (radiologists, surgeons, oncologists, etc.) thought that the data may be incorrect.  Oh...and the Path. MD also said we are lucky that "no harm was done" and that they caught it before Mom started her treatment (which would have been completely ineffective)!!  I'm boiling to say the least and am now wondering if we can trust the rest of her path report.  I'm thinking of getting a second opinion but my mom's not too keen on the idea.  ACK!!!

twink

I had my slides sent to Johns Hopkins for a second opinion path report (there's a link on their website for this specific service).  It made a difference in treatment decisions at the time.  I'm sorry your Mom will have to do chemo but it's better to find out now rather than later. Best wishes.

KPolasek

twink,

 How much did it cost you to send your slides to John Hopkins for second opinion?

FloridaLady

I went blindly with what the doctor said for the first few months.  After the numbness wore off...I started asking for a copy all my scans, paths and blood work.  I keep everything in a binder so I can reference for myself later.  There will be a lot of test over the next months...years.  I this has come in very handy.  A lot of doctor will not tell you everything on a scan also...don't want to upset you.  I want to KNOW!

I hope you get your Mom's treatment back on track and feel comfortable with her doctors.

Flalady

TenderIsOurMight

I am very sorry for this trauma. Every detail told to us counts with breast cancer, and it is a shock to go from ER+ pathology to triple negative requiring chemotherapy. There is no easy way to ease the discomfort from this change in pathology.

 

ER+ disease comes in all grades, grade one to three too, just as triple negative breast cancer.

 

I wish your mom and you all the best during treatment and thereafter, with very attentive, individual care.

Tender 

twink

the cost of the second opinion was covered by my insurance company but it seems to me it was less than $500 ($350?).

HeatherBLocklear

I concur with the above. Get a second opinion.

Hugs,

Annie

NarberthMom

Another vote for the second opinion!

snowyday

This happened to me but I was the one who found the supplemental report showing I was not triple negative but ER-PR-HER2+.  I was furious.  Stlil am.  And I've sent everything off to another hospital for a second opinion, but I went through chemo and rads already.  So now I don't trust anyone, I'm waiting for the second opinion.  I also make sure I get a copy of any test I have now. Lucky for my two women on the board here were able to help me sort out what was going on so I could talk to the oncs with knoweledge I'm angry because I had asked for these report so many times and they gave them to me, finally got them in May.  I hope that your mom can get a second opinion good luck. 

CalGal

Sherry -

Sorry to hear about the mistake re:  your mom.  What a blow and let-down since you were all relieved and focused that she wouldn't have to do chemo and now she does ... 

Unfortunately, mistakes are all too common.  Friends of mine have been told "you're too young for bc, let's just watch that lump" ... and then they got dx'd at Stage IV ...  

After having bi-lat lumpectomies, on my second 6 month f/u mamm, the radiologist missed the bc tumor!  How do you miss a breast cancer lump on the mamm of a woman who already had bc?!  (As usual, I asked to see the film and my bc surgeon did not have it and hadn't even looked at it.  He said he would.  Evidently, he didn't look at it until I found the lump myself two months later and then my films were "missing".  Later they turned up in my file and my suspicions were confirmed.  Also, it wasn't just recurr bc, but also mets - and I had to be the one to ask for a CT scan (which discovered them).    As with your mom, I was told that "no harm was done".  

Another friend with bc mets to the spine questionned the impact to her spine ... and suddenly, there was an emergency for her to have major surgery on her spine so that the bc would not damage it.   I could go on and on ... It's scary.

I'm a huge fan of getting copies of all reports and second and even third opinions.   (Obviously, in your case, as the report was in error, so having a copy of that didn't help).  So often, there is no one right answer to our treatment ...

Best to you and your mom,

CalGal 

sherryjananderson

Thanks to everyone who responded.  I'm feeling a bit better today. Our oncologist was very upset and went over to the path lab today for a conference. They are discussing alternative protocols (i.e. electronic interface) to make sure this does not happen again so that they don't have to rely on an overworked underpaid employee to enter in data.  We have an appointment with the oncologist on Monday and I'm going to see about sending off her slides to get a second opinion. I just don't feel comfortable putting my mom under chemotherapy if there is the slight chance that the findings could be wrong, which might influence which drugs she will get.

Again, thanks to everyone.  I also have to say that I'm grateful that so many people want to share their stories. Sometimes they are so sad and other times very encouraging -- but all of the comments and communities on the web have given us such comfort during this very scary time.  Even though I'm not the one with BC, I feel like I'm my mom's voice.   Since all this happened July 3, I've learned so much. I have my own very first mammogram scheduled for next week.  Good luck to everyone!!